Mom's Diagnosis

acf87
acf87 Member Posts: 3
in Peritoneal Cancer #1
I'm new to this forum but from what I've read, there are lots of people to talk to here and that's exactly what I need.

My mom was diagnosed in May 2010 with PPC. She went through 6 rounds of chemo, had her debulking surgery, and then had either 4 or 6 (can't remember), more rounds of chemo. The first few rounds of chemo went so well that when they went to do the debulking surgery, there was nothing to remove (heard this directly from the surgeon's mouth). The surgeon did take out her omentum and appendix though, just to be safe. The last few rounds of chemo were given as a follow-up, again, just to be safe.

She's been doing fine since about April of this year but now she's noticing distention and swelling in her abdomen. Her CA 125 is back up to 25 (I know it's typically higher than 35 is when they start to get concerned), but its been increasing with each test she's had in the last few months. She's scheduled for a PET/CT scan on Wednesday and we'll hopefully know more then. I just know from what I've seen online that the recurrence rate for PCC is really high.

Everything I've seen online doesn't give much hope for her or any PPC patient. The survival time periods that I've found tell me she has between a year and two years left. I don't know if her doctors have said anything to her about her prognosis or not as she won't share that kind of information with my brothers and I because she doesn't want us to worry. I'm just so confused and terrified and I have no idea where to go for information. No one seems to have much information on PPC, just Ovarian, which is obviously not what my mom had/has. Can anyone give me more info on this type of cancer or give me some hope that I may have more than a year or two left with my mom?

-Amanda

Comments

  • UffDa
    UffDa Member Posts: 2
    #2
    I also have PPC and was
    I also have PPC and was diagnosed in January of this year. I have found the lack of information a problem, also. The good news that I have for you is that after my debulking surgery I asked the surgeon about life expectancy, hoping for as many as 5 years. My surgeon said that she has had patients live as many as 10 years. It is still too little, of course, but 10 years is much more hopeful than the 1-5 that I had originally thought was expected.
    I wish your mom the best!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #3
    UffDa said:

    I also have PPC and was
    I also have PPC and was diagnosed in January of this year. I have found the lack of information a problem, also. The good news that I have for you is that after my debulking surgery I asked the surgeon about life expectancy, hoping for as many as 5 years. My surgeon said that she has had patients live as many as 10 years. It is still too little, of course, but 10 years is much more hopeful than the 1-5 that I had originally thought was expected.
    I wish your mom the best!

    PPC too
    I also have PPC and was diagnosed 2 years ago. It is true, information about our cancer is very limited and when you find a site like this it is a god send.

    I live in the UK and surgery is not performed as often over here, hence I have not had surgery as my cancer is made up of "sand like cells" all over my peritoneum. My oncologist did mention 8 - 18 months life expectancy when I was first diagnosed and it is now 2 years later :)

    UffDa
    I am so pleased to read your post where your surgeon suggested a 10 year life expectancy so I will buy a ticket for that lol. To be serious I am coping well with my chemo regimes. I am currently on my 3rd recurrance and the chemo I am on is working a treat. I view my illness as a chronic condition and expect to always need chemo once a year to "control" the cells and kill them off.

    All the best, Tina xxx
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #4
    It's true, the longer you
    It's true, the longer you stay in touch with this forum, the more you read of others who live much longer than was expected,so chin up :)

    One never knows in the end?

    Take good care,

    AussieMaddie
  • acf87
    acf87 Member Posts: 3
    #5
    Thank you so much everyone.
    Thank you so much everyone. I was SO glad to stumble on this forum, it's a really nice break from all the negativity I've been reading. Blessings to you who are going through the disease yourself or have someone close to you fighting. Thank you again, I can't even begin to express how much better your comments have made me feel.
  • daBeachBum
    daBeachBum Member Posts: 164
    #6
    Hi Amanda
    Amanda,

    I'm sorry you find yourself here, but welcome you nevertheless. I'm in the minority here since I am male, and my peritoneal mets are secondary.

    What I can tell you from my experience on this board and the colon board is that the mortality timelines that people see on-line really seem outdated to me. I think the statistics they use are years old and haven't kept up with the new treatments available. There are many of us here who maintain a good quality of life (even if our prognoses have us in "chemo for life") such as I am.

    I suggest you take a look at http://www.livestrong.org/

    They have some great information on the site and a very highly regarded "Navigator" program that can put you in touch with local resources and good information.

    I also urge you to take good care of you. Being the loved one of a patient can be harder than being the patient!

    I send warm and healing thoughts to your mother and you...

    Ray
  • SOPHIE333
    SOPHIE333 Member Posts: 92
    #7
    Hi Amanda
    My mum was diagnosed in february this year with primary ppc stage 4. She is now 62. She has had 8 rounds of carbo/taxol and is now on a chemo brake until reoccurance and ca 125 is going up slowly. I too am glad I found this board, it has ment a lot for me and mum reading all kinds of treatments, getting others suggestions for medicine or treatments and to know that people here acutally live longer than statistics will tell.

    I live in Europe and grew up in Asia. In Asia we always talks of body and mind and in cases like this chronic cancer, I do believe that your mind and positiveness can contribute to a longer and a more quality life. So I hope you will have the same benefit of this board and all amazing people writing here to support you and your mum.

    Warm thoughts from Sophie
  • acf87
    acf87 Member Posts: 3
    #8
    Update
    Well, I just got off the phone with my mom. She had some tests run over the last month or so and the PET/CT scans revealed a suspicious mass in her abdomen. Her doctors have enrolled her in a chemo trial that will begin on Jan. 16th. However, she may be heading to get more tests today/tomorrow because she's been having some abdominal pain and other issues so her oncologist wants to find out if its progressing/growing. Hopefully the chemo trial will move her in a positive direction, but at this point, all we can do is wait and pray. Thank you all again for your support, kind words, and hope. It really has provided a world of comfort.

    -Amanda
  • AussieMaddie
    AussieMaddie Member Posts: 345 Member
    #9
    acf87 said:

    Update
    Well, I just got off the phone with my mom. She had some tests run over the last month or so and the PET/CT scans revealed a suspicious mass in her abdomen. Her doctors have enrolled her in a chemo trial that will begin on Jan. 16th. However, she may be heading to get more tests today/tomorrow because she's been having some abdominal pain and other issues so her oncologist wants to find out if its progressing/growing. Hopefully the chemo trial will move her in a positive direction, but at this point, all we can do is wait and pray. Thank you all again for your support, kind words, and hope. It really has provided a world of comfort.

    -Amanda

    Information about PPC
    Just wanted to add that most of my information about PPC has come from this forum.

    Speak again soon :)

    AussieMaddie

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